Imogen’s story – Coeliac disease

Tell us a little about yourself and Imogen

“I’m Kerry and I live in Wolverhampton. I’m happily married and we have three beautiful children: Joseph, who is nine, and four-year-old twins, Imogen and her brother, Ethan. I work part-time in the apprenticeship industry and I am a volunteer for both NICS Wellbeing C.I.C and Coeliac UK. In our spare time, we love family days out and exploring.”

Can you describe when her symptoms started and what they were?

“As a baby, Imogen was very unsettled, constantly teary, tired and clingy. It was heartbreaking to see her like this. I knew something was wrong, but I wasn’t sure what. I put it down to her being a baby girl, as her twin brother and older brother were both the opposite: relaxed and calm. She had symptoms such as a swollen and bloated tummy, loose stools, constipation, fatigue and eczema (a condition that causes your skin to become dry, itchy and bumpy).”

Note: In some people affected by coeliac disease, eczema-like skin rashes can be dermatitis herpetiformis. It is a skin disease associated with coeliac disease that causes skin rashes that can also blister. It is common to see around the elbows, knees, shoulders and face. If this is present, you can get referred to a dermatologist and have a skin biopsy to diagnose it.

“We tried formula feed, but she wouldn’t settle and would scream a lot. So, we introduced solid foods when she was around three to four months old, thinking hunger might be the issue. She seemed calmer at first, but it didn’t last.”

Note: NHS guidance recommends starting solid foods when your baby is around 6 months old. At this stage, breast milk or infant formula should still be their main source of nutrition.

Talk us through what happened just before Imogen’s first birthday

“On 7th July 2021, she ended up in hospital after a horrendous sickness bug. That was when I began pushing for more answers from the doctors because something just wasn’t right. Her symptoms persisted and her tummy became very swollen. We rushed her to the emergency room, where she underwent several tests and scans. Everything came back clear, apart from an inflamed liver.”

Tell us more about Imogen’s journey to diagnosis

“Her swollen tummy didn’t go away, and her behaviour changed drastically. She would scream uncontrollably, and we could see how much pain she was in. At this point, we suspected there was more to it, but we had never heard of coeliac disease and weren’t aware of the signs or symptoms.

Just before Imogen’s diagnosis, we returned to hospital with Imogen again, after previously being sent back home from hospital because her symptoms hadn’t changed. Her tummy was still very swollen but again, no one knew what was wrong. Imogen had more blood tests and we stayed in hospital overnight. The next morning, after Imogen had eaten food which contained gluten and her symptoms persisted, a wonderful consultant suggested testing for coeliac disease.

Finally, in March 2022, Imogen was finally diagnosed with coeliac disease at 18 months old following two blood tests. I thank this lady every day as we finally got the diagnosis we so desperately needed.”

Note: When it comes to diagnosing coeliac disease, two antibody blood tests are usually carried out. These must be done whilst gluten is still being eaten for at least six weeks before each blood tests. The first-choice test is known as a Tissue Transglutaminase (TTG) test and if this is weakly positive for coeliac disease, then an Endomysial Antibody (EMA) test is done. Coeliac disease can also run in families and if other close relatives are experiencing similar symptoms, they should be tested.

What do you remember about Imogen’s hospital experiences?

“The first time Imogen was admitted to the hospital was during the COVID-19 pandemic. I was the only one allowed in the hospital with her, and we were still wearing masks. They had no idea what was wrong with her and ran every check and scan possible. At one point, they even suggested she potentially had a tumour in her tummy because it was so swollen, but not once did they test for coeliac disease.”

How did this impact you emotionally and how are you and Imogen doing now?

“I had never heard of coeliac disease before the consultant mentioned it. I searched on Google for it straight away. I’d always thought gluten-free diets were just “fad” diets, and I had no idea they were connected to an autoimmune disease. I cried when I realised the challenges that lay ahead: the unknown, the changes we’d have to make, and the future Imogen would have to navigate with this condition.

That same day, I came home and cleared out every cupboard, disposing of any food items that contained gluten. We were astonished by how many products contained it. I remember standing in the “free-from” aisle in the supermarket for the first time and crying!

We had to relearn how to cook all over again so that it is safe for Imogen. As soon as we started Imogen on her gluten-free diet, we could see a change straight away! It’s truly amazing to see how happy and healthy she is now.”

What do you wish people knew about coeliac disease?

“That it’s not something you can just grow out of. A ‘strict’ gluten-free diet is Imogen’s only treatment, and even a crumb can make her very poorly! I’m eager to raise awareness because there is still so little known about coeliac disease. In the future, I wish for more inclusion, understanding and awareness about the condition, so that those affected receive the support they need. I hope life becomes easier for Imogen and anyone living with coeliac disease.”

Note: The treatment for coeliac disease is to follow a lifelong gluten-free diet. If you are diagnosed with coeliac disease, your doctor should refer you to see a dietitian.

“I love the work that Guts UK charity does as they advocate for better awareness for all digestive diseases.”

About Guts UK

Guts UK is the national charity for the digestive system and the only UK charity funding research into the whole digestive system.

People are suffering. People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that. 

With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Please consider donating today. Your donation will help fund research leading to earlier diagnoses, kinder treatments and ultimately, a cure.